I'm 99% sure I'm about to be diagnosed with HIV.

[dunnoNEmore8]

I'm a gay male. I have only had one sexual partner in the past two years. Prior to this sexual experience, I was conclusively tested negative for all STDs including HIV well beyond all window periods. This is my timeline.

On June 1st, an ex-boyfriend that I haven't spoken to in 5 years contacted me and told me he would be in town for a night on business and asked if we could get together. He assured me he was negative for all STDs. As we had dated for a brief time years ago, I trusted him. That night we engaged in oral sex WITHOUT ejaculation. We both finished on ourselves by mutual masturbation. These aren't particularly risks as far as I'm concerned. What concerns me is that before we even began the oral sex, he was cuddling me from behind, and briefly inserted his penis into my anus for about 3 seconds. I heard this is called dipping. I was angry with him, but he assured me he was negative for HIV and other STDs, so I believed him and as I had no insurance at the time, didn't seek PEP. Besides that brief dip, no other anal sex occurred.

Two weeks later I wake up with an illness that had knocked me flat on my back. Chills, low-grade fever (99.3-99.5 at it's highest), extreme fatigue that took my breath away, headaches, neck stiffness, terrible muscle and joint aches, muscle twitches, a rash on my elbows, and a bad metallic taste in my mouth. As a gay man who knows his fair share about HIV, I was assuming this was ARS because of the timeline and symptoms. (Who gets the flu in the summer)? This has lasted up until now (3 months of this illness) and it is only now showing signs of letting up. Since then, he still claims to be negative, but has been acting sketchy and avoiding me. I didn't believe him so I waited to be tested.

9 weeks post exposure, I went to the doctor and they tested me for basically everything. All STDs including HIV, Hepatitis A, B, and C, thyroid, other autoimmune diseases (lupus) etc..., lyme, complete blood count, lipid panel, toxoplasmosis, mono (ebv), cmv, sarcoidosis, endocarditis, etc... A whole gambit of tests. Everything came back negative and normal, yet everyday I wake up feeling like I have been hit by a bus and have a bad case of the flu. The doctors can't figure out why. My symptoms are not the psychosomatic kind. They are very real and debilitating. Recently I've developed a severe dry, rough, flaky patch on my face that I believe to be seborrheic dermatitis.

These are my HIV test results thus far:
At 9 weeks post exposure I had a 4th generation HIV ab/ag combo test-Negative
At 12 weeks post exposure I had an ORAQUICK oral home test-Negative
At 13 weeks post exposure I had an ORAQUICK oral home test-Negative
At 14 weeks (more than 3 months) post exposure I had a 4th generation HIV ab/ag combo test-Negative

I was constantly preparing myself for a positive result, so it shocked me to repeatedly get negative results. It was like I was holding my breath for my life to change forever, and it didn't happen each time. My doctor told me she no longer thinks it's HIV because I've consistently tested negative and outside the window period.

My symptoms have continued to this day (3 months later). I'm miserable. Essentially bed-ridden because of the fatigue. It kind of feels like I've run a marathon and lifted weights all day, then was hit by a truck afterwards. The mornings are terrible. It feels like I've had the flu for the last 3 months. The only thing I know I have is an enlarged spleen, but I've had that for almost a year now and that was found long before any of this ever happened. (October of 2016)

Do I need to test out to 6 months? The CDC says 97% of people have detectable antibodies by 3 months. I guess it's possible that I'm a late seroconverter.

Should I take a PCR RNA test? My doctor is extremely reluctant to give me one. She says she will only give one to me if I test positive on an antibody test, so I would have to go out of pocket to pay for this test. It's pretty expensive.

I have no clue what this could be at this point, and am still convinced that it is HIV because of the timing and symptoms.

If anybody has any thoughts I would greatly appreciate it.

[Jim Allen]

RNA testing is not recommended for routine testing, it has a high false result rate and your doctor is correct to be reluctant to run unneeded and expensive tests

You are HIV negative, the result is conclusive, 99% of people will produce sufficient antibodies to test for HIV within 3 months, (No matter how low the Viral load) the outliers are patients receiving cancer treatments and on autoimmune suppression medication.

I presume you are neither.   

Here's what you need to know in order to avoid hiv infection:
Use condoms for anal or vaginal intercourse, correctly and consistently, every time, no exceptions.

Keep in mind that some sexual practices which may be described as ‘safe’ in terms of HIV transmission might still pose a risk for transmission of other STI's, so please do get fully tested regularly and at least yearly for all STI's including but not limited to HIV and test more frequently if unprotected intercourse occurs

Also note that it is possible to have an STI and show no signs or symptoms and the only way of knowing is by testing.

More information on HIV Basics, PEP, TaSP and Transmission can be found through the links in my signature to our POZ pages, this includes information on HIV Testing

Kind regards

Jim

Please Note.
As a member of the AM I Infected Forum you are required to only post in this one thread no matter how long between visits or the subject matter. You can find this thread by going to your profile and selecting show own post and it will take you here . It helps us to help you when you keep all your thoughts or questions in one thread and it helps other readers to follow the discussion. Any additional threads will be deleted.

 

[dunnoNEmore8]

Thanks Jim, I appreciate the response. I am not on cancer treatments or autoimmune suppression medication.

Are you sure I shouldn't take a PCR RNA test? I'm really ill and it all started after a sexual encounter. Shouldn't I take one to rule out the possibility of being a late seroconverter or someone with a seronegative infection (someone who never develops antibodies but is indeed HIV positive)? I've read that this is extremely rare, but I have no clue as to why I'm so ill other than HIV. I've already tested negative and normal for so many other ailments and conditions. I feel like I've left no stone unturned.

Maybe I should stop pursuing the HIV angle, and work with my doctors to find other possible reasons for my symptoms. I'm just so confused and hopeless.

[Jim Allen]

Shouldn't I take one to rule out the possibility of being a late seroconverter or someone with a seronegative infection (someone who never develops antibodies but is indeed HIV positive)?

No such thing in this decade, also if your illness was caused by HIV you would have tested positive already.  This is because the only reason you get ill from a HIV infection initially is due to the antibodies response from your body, not the HIV itself.

RNA testing is not needed, unreliable and expensive.

I am sorry you are ill but its not caused by HIV from the incident you posted about, so unless you had a different exposure in the last 3 months, you are HIV negative.

Jim

[dunnoNEmore8]

I still hadn't been feeling very well, so I went to get another 4th generation ab/ag blood test at the 18 week mark. I just tested positive. I thought three months was conclusive? I'm devastated.

[Ptrk3]

Three months is a recommended guideline by many experts, which means that the vast majority of tests after 13 weeks are "conclusive."  Some experts recommend a longer time and there are always outliers (the Bell Curve distribution).

Since you have had negative tests previously, please check with your health care provider to determine whether you should take another test to confirm your 18-week tests.  False positives do occur.  Work closely with your healthcare provider on this.

If it does turn out that you are conclusively "positive," it is not at all the end of the world.  You will live a long and healthy life, once you are on an appropriate antiretroviral regimen (if you are, indeed, positive).

Please continue to use this forum for support, guidance, and education, and keep us informed of your ongoing developments in order that we can provide you the advice you may need.

[momtobe2]

How are you, dunnoNEmore8?

Did your doctor confirm the result?

[Ptrk3]

momtobe2:  though your thoughts are in the right place, for quality control and assurance, the "Am I Infected?" forum can only be responded to by the moderators, so please don't post in this forum again.

However, in the spirit of your question, I'll ask it for you:  dunnoNEmore8, how are things?  Did your doctor confirm your most recent test result?  Please let us know.  There are many here on these forums who are willing to support you, whatever your confirmed results may be.

[Jim Allen]

I still hadn't been feeling very well, so I went to get another 4th generation ab/ag blood test at the 18 week mark. I just tested positive. I thought three months was conclusive? I'm devastated.

It simply a reactive result so first go and confirm the results with conformation testing. Keep in mind a reactive result is pretty common so no need to panic.

To answer the question what does it means if you are positive, well its means you simply had an exposure since the window period ended of your last (sets) of negative results, so negative result over the past incidents but something far more recent.

Jim

[dunnoNEmore8]

I found out that the 4th generation test result at 18 weeks was a false positive. A subsequent 4th generation test, as well as confirmation tests have turned out to be negative. My doctor says I'm HIV negative. That was a scare. Thanks for the support through this. I really appreciate it.

[dunnoNEmore8]

I'm not sure what to do. I'm emotionally and physically exhausted. I've been sick with what feels like a bad flu since mid-June, and the doctors cannot figure out what is wrong. Two weeks prior to me getting sick was the sexual event I talked about at the top of the thread. It seems strange to be this ill and not have any answers. I promise you this isn't a psychosomatic illness. The symptoms are real and debilitating. I don't know where to turn at this point. I had a scare earlier this week where I thought I had a positive test, but have since been told it wasn't positive. The test failed to work properly so they ran further tests that turned out to be negative. At this point, I have a negative HIV 4th generation ab/ag blood test at 4 months. Is that enough to rule out infection? I just don't know. My doctor won't refer me to an infectious disease doctor because I have no positive tests for any infection. I'm lost. Can I safely assume I'm HIV negative?

These are my HIV test results thus far:
At 9 weeks post exposure I had a 4th generation HIV ab/ag combo test-Negative
At 12 weeks post exposure I had an ORAQUICK oral home test-Negative
At 13 weeks post exposure I had an ORAQUICK oral home test-Negative
At 14 weeks (more than 3 months) post exposure I had a 4th generation HIV ab/ag combo test-Negative
At 17 weeks post exposure I had an ORAQUICK oral home test-Negative
At 18 weeks post exposure I had a 4th generation HIV ab/ag combo test-Negative

[Jim Allen]

Hi

Look the HIV findings are conclusive, 3 months ago you did not have hiv and if you had no exposure since than its a confirmed result

We do not discuss symptoms here, simply because it means nothing in terms of HIV. Most people experience none initially and/or too mild to notice. Also if any of your symptoms were caused by a reaction to HIV it would definitely mean antibodies would be present and your results would all be positive

They are not so In short your symptoms, like the vast majority of posters here simply have nothing to do with HIV.

Listen I do wish you well but there is nothing more we can do for you in this setting, continue to work with your doctor to find out the true cause of your illness and treatment.

Take care

Jim

[dunnoNEmore8]

I'm still not feeling well. I've been sick for 5 months now, and I'm not showing any signs of getting better. I decided to keep testing out to 6 months because this illness only started after the sexual encounter I described in the first post. I have not had any exposures since the exposure on June 1st. I've not even as much as kissed someone since June 1st. At the beginning of this month I had yet another ORAQUICK test. It seemed like a negative result at first, but then I started looking at the test stick and could make out an extremely faint red half-line at the T mark. It was so faint that you had to hold it up to a flashlight to even see it. I panicked thinking that I was finally seroconverting, so I decided to go to the lab and have another 4th generation ab/ag combo test. This test came out negative. I'm assuming the ORAQUICK test must have been a fluke, because the 4th generation test taken afterwards was negative. From what I understand, blood tests tend to be more accurate than the oral tests. At the beginning of this week I went to see an infectious disease doctor. He said that at this point he thinks it's safe to assume that I'm HIV negative, but he decided to run a RNA Viral Load test for my peace of mind. I have a bad feeling that it will detect something because of how I've been feeling these past 5 months. This whole thing has been a nightmare.

These are my HIV test results thus far:
At 9 weeks post exposure I had a 4th generation HIV ab/ag combo test-Negative
At 12 weeks post exposure I had an ORAQUICK oral home test-Negative
At 13 weeks post exposure I had an ORAQUICK oral home test-Negative
At 14 weeks (more than 3 months) post exposure I had a 4th generation HIV ab/ag combo test-Negative
At 17 weeks post exposure I had an ORAQUICK oral home test-Negative
At 18 weeks post exposure I had a 4th generation HIV ab/ag combo test-Negative
At 22 weeks post exposure I had a 4th generation HIV ab/ag combo test-Negative

[Wade]

HI,

There really is nothing more we can help you with here...you have tested conclusively negative.  Continue to work with your doctor and find out what's wrong.

In the mean time please do not post anything more about your negative results as it will lead to a time out/ban.
This is out of kindness to seek the help we can not provide in this setting.

Wishing you the best,

Wade

[dunnoNEmore8]

Thanks for the response Wade. I'm sorry, I will stop posting about my negative results. I'm going to continue working with my doctor to figure this situation out. Thank you all for the help.

[Wade]

Good luck with getting things sorted out and I hope you are able to move past this and enjoy your life.

Best,

Wade